Mom's MSA/Parkinsonism Journey

My mother, Jennifer, ran marathons for many years. She always ran them in someone's honour and after the race would give the medal to a relative of the one she was honouring. In her words "the race they are running is so much harder than mine" Now she is in a horrible race of her own and needs help.

My father, David, returned to school and obtained his PhD to help benefit the family. After completion, he discovered that wages were insufficient to support his family and was forced to return to the construction field. Jennifer was working in the field of childcare as a childcare assistant (CCA) With many student loans to repay, Jennifer decided to upgrade her credentials in an effort to make more money and help the family. She had begun to exhibit some unusual symptoms but professional could not determine the cause, and so she continued to work three days per week and attend Red River Community College two days per week to pursue her Early Childhood Educator Level 2. Jennifer excelled in the program winning many awards, a gold medal, and a warrior award designed especially for her. Throughout all this the symptoms continued to increase until such time as she was forced to acknowledge that she could not continue to work. She continued the course and on her 45th birthday attended the Graduation Ceremonies crossing the stage in her wheel chair to get her diploma. With my mother unable to work, there would be even more stress and expenses put on my family. 

It has been determined that she has a very aggressive form of early onset Parkinson's disease or possibly Multiple System Atrophy. Either comes with a multitude of debilitating symptoms which make every day a challenge and exhausting. One of the worst of these is the fact that her legs cannot be depended on. On days when she feels a little better and is able to walk some, they can give out without notice. This has caused many painful falls and injuries. Another is a sudden attack of low blood pressure which can cause a loss of consciousness . In order to help her well- being she has been advised to obtain a special walker as well as an indoor /outdoor recumbent bike. With all their expenses this has not been possible thus far. The entire scenario causes my mother and family much anxiety and depression which, in turn, increases and makes her symptoms worse.

Our goal is to try to help her, to try to ease some of the strain, and to help give her a better quality of life. My Mom has always been a giving person to others including myself and my three siblings. I hope that we can make her life a little easier. 

About the Disease

Parkinson's Plus/Multiple System Atrophy is a neurodegenerative disorder that affects the nervous system and physical movements. It is very rare. It often results in dyskinesia, rigid muscles and other symptoms that can cause the body to freeze, making walking, talking and eating difficult. MSA is a fatal disease while Parkinson's is not. Both have similar symptoms that makes diagnosis so difficult. Little research has been available into the causes and treatments, although more is available for Parkinson's itself. Medications, in part, help control some symptoms but effects can vary on a daily basis. 

Research is developing, and although we are scared for what lies ahead there is always hope.